TY - JOUR
T1 - Crossroad decisions in deep endometriosis treatment options
T2 - a qualitative study among patients
AU - Metzemaekers, Jeroen
AU - Slotboom, Suzanne
AU - Sampat, Jonathan
AU - Vermolen, Polo
AU - Smeets, Mathilde J.G.H.
AU - Elske van den Akker-van Marle, M.
AU - Maas, Jacques
AU - Bakker, Esther C.
AU - Nijkamp, Marjan
AU - Both, Stephanie
AU - Jansen, Frank Willem
PY - 2021
Y1 - 2021
N2 - Objective: To study the experiences, considerations, and motivations of patients with endometriosis in the decision-making process for deep endometriosis (DE) treatment options. Design: Qualitative study using semi-structured in-depth focus group methodology. Setting: University medical center. Patient(s): A total of 19 Dutch women diagnosed with DE between 27 and 47 years of age. Intervention(s): Not applicable. Main Outcome Measure(s): Focus group topics were disease impact and motives for treatment, expectations of the treatment process, and important factors in the decision process. Result(s): Women reported that pain, fertility, and strong fear of complications are important decisive factors in the treatment process. The goal of conceiving a child is considered important, however, sometimes doctors emphasize this topic too much. It emerged that complication counseling is frequently about surgical complications, whereas side effects of hormonal treatments are neglected. Shared decision making and information about treatment options, complications, and side effects are not always optimal, making it difficult to make a well-considered choice. Despite negative experiences encountered after surgery, the positive effect of surgery ensures that most women do not regret their choice. Conclusion(s): In the treatment decision process for patients with DE, pain is almost always the most important decisive factor. The wish to conceive and strong fear of complications can change this choice. Doctors should understand the importance of fertility for the majority of women, but, also, if this is not considered paramount, respect that view. To improve shared decision making, exploration of treatment goals, training of healthcare providers, and better patient information provision are desirable.
AB - Objective: To study the experiences, considerations, and motivations of patients with endometriosis in the decision-making process for deep endometriosis (DE) treatment options. Design: Qualitative study using semi-structured in-depth focus group methodology. Setting: University medical center. Patient(s): A total of 19 Dutch women diagnosed with DE between 27 and 47 years of age. Intervention(s): Not applicable. Main Outcome Measure(s): Focus group topics were disease impact and motives for treatment, expectations of the treatment process, and important factors in the decision process. Result(s): Women reported that pain, fertility, and strong fear of complications are important decisive factors in the treatment process. The goal of conceiving a child is considered important, however, sometimes doctors emphasize this topic too much. It emerged that complication counseling is frequently about surgical complications, whereas side effects of hormonal treatments are neglected. Shared decision making and information about treatment options, complications, and side effects are not always optimal, making it difficult to make a well-considered choice. Despite negative experiences encountered after surgery, the positive effect of surgery ensures that most women do not regret their choice. Conclusion(s): In the treatment decision process for patients with DE, pain is almost always the most important decisive factor. The wish to conceive and strong fear of complications can change this choice. Doctors should understand the importance of fertility for the majority of women, but, also, if this is not considered paramount, respect that view. To improve shared decision making, exploration of treatment goals, training of healthcare providers, and better patient information provision are desirable.
KW - Decision making
KW - endometriosis
KW - focus groups
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85092630309&partnerID=8YFLogxK
U2 - 10.1016/j.fertnstert.2020.06.041
DO - 10.1016/j.fertnstert.2020.06.041
M3 - Article
AN - SCOPUS:85092630309
SN - 0015-0282
VL - 115
SP - 702
EP - 714
JO - Fertility and Sterility
JF - Fertility and Sterility
IS - 3
ER -